Hi there,
Mum had a mastectomy in April and didn’t have a very good time after the operation as she suffered with a horrible infection and her scar took a long time to heal. She has had the all clear from the cancer and hasn’t had to have any further medication or treatment so is very very lucky.
But she doesn’t suffer with terrible pain and is constantly popping pain kilers. She also has a lump just below her scar that is uncomfortable.
She had a visit from her breast care nurse today who said the pain could be due to the cut nerve endings although they have usually healed/ceased to be so painful after 6 months.
Just wondered if anyone else has had any similar experiences.
Thanks in advance,
Heather x
Hi Heather,
Just to reassure you, it takes a very long time for nerve pain to go. I’m 2 years post surgery for WLE and node clearance and am still nervy, although not as bad as it was. I also still have the odd stabbing pain in one of my ribs from radiotherapy and am still a bit pink despite it being 18 moths ago. I was with some other BC ladies this evening at a group I go to once a month and we were all complaining about nervy aches/pains despite all being nearly 2 years from surgery. One lady said she has to sleep on her back now. Another said she went for a mammogram last week and the radiographer told her they see ladies who are 8 or 9 years down the line who still experience pains from time to time.
I reported this when I was discharged from oncology 2 months ago and the Consultant told me the cut nerves try to find their endings. They can’t and end up bang together with the wrong ones, hence the pains.
Hope this helps your mum.
Nerve pain is horrible - I get it from radiation damage and now secondary spread in my spine. I’m one of those frightening women whose cancer is extremely aggresive so I tend not to post to women early on incase my story scareds people!! However, it does give me knowledge and experience of many things so thought it might be helpful to your mum.
Due to my secondaries, I am seen by the palliative care team who have the experience and knowledge of pain control. They recommended that the GP gave me low dose amitriptyline - I started off on 10mg at night and now take 35 mg after more than a year of taking it as my secondaries worsened. You take it at night as it makes you sleepy and this can last into the next day first but then your body gets used to it and I’m not tired in the morning - well no worse than usual!!. I am now taking 35mg as I have nerve pain from a collapsing vertebrae plus the nerve pain from rads.- see what I mean - I have a scary form of bc. Amitriptylline at high doses such as 100mg or more is used as an anti-depressant so if you are prescribed it and read the leaflet it can give you a shock asit makes it seem as if they are treating you for depression. One of the side effects of high dose amitriptylne is relief from nerve pain but that effect starts at low doses luckily!!
Another drug is garbepentin. When you start it, as it can make you very sleepy, you start with 1 tablet a day for a few days then 2 for a few days and finally, three a day and once you get used to it, the tiredness stops. Nobod told me that and I started on 3 a day and couldn’t keep awake and then it wa explained to me how to take it correctly so the tiredness is not overwhelming.
For severe nerve pain, they recommended to me clonazepam at 0.5 mg but again due to increasing spread I take 1mg now. Again, it is used at high doses in psychiatry so people get scared when they read the leaflet.You take it at night as it does make you a bit sleepy.
I feel it is wrong to leave people in pain especially as there are different tablets that can help. I would get our mum to go back to your GP to ask about these drugs or ask to be referred to a pain control clinic as they are the experts and might have other ideas.
I’m presuming they have investigated this lump and it is innocent or has it never been scanned or biopsed. If it has not be checked by an oncologist, I would make sure you do. Scar tissue and fatty lumps are common but you need to rule out spread - oh what a prophet of doom I am- I don;t want to frighten you but thought it was best to ask that question so you can act upon it if it has not been checked by an onc.
Hopefully, the GP can help but it mighht be best to see an onc rather than abreast care nurse.
Hope you can get something sorted for her - it makes me angry when there are things that can be done but it doesn;t get offered.
Good luck. I’m away for afew days now but would like to know what happens if that is OK - sorry I’m very nosy.
It;s lovely for your mum to have such a caring daughter.
Kate
Hope your mum can see someone who can help
Hi Heather
I also had a lump afetr surgery but mines was at the side of the scar, this turned out to be a blood clot which reacurred twice and i had it cut out, not nice i must admit and worrying.
Allison xx
Your [mum’s] oncologist and consultant should both be informed, who will discuss your case during their weekly MDM meeting.
If nothing can be resolved and symptoms persist ask them to refer you to a Pain Management Clinic
HTH
I too have 'trying to connect’nerve pains occasionally 2 years post surgery though much less than before.My onc says I may always have them but they are not important.I do agree that your mum must have that lump checked out asap.
Vx
Thank you so, so much to all of you that I have answered my thread. Your information has been very helpful and I have been able to inform mum with some knowledge at last! The latest on her lump is that the breast care nurse isn’t too concerned but may refer mum to her consultant if it continues to cause pain. So I’m going to push for mum to get on with this. She’s pretty pre-occupied at the moment as dad has just returned from respite care from his cancer and my sister is suffering badly with post natal depression. So we may have to put her on hold for a little while, but I will keep in touch and no doubt ask for your support and help soon,
Very best to you all,
Love Heather xxx